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hey everyone, thanks for accepting me into this group i have been misdiagnosed with migraines for years. The past 4 years i have been experiencing what i now know is episodic cluster headaches. it starts off with one attack a day and shortly escalates to 8+ attacks a day. I am on day 14 and going to the emergency department today to beg to see a neuro, get scans done and try the oxygen. I have had scans when i was 15 (25 now) and nothing was found. i have a referral to see a neuro but cant afford it/the wait times are too long for me. i have trialed numerous preventatives, currently trialling Indometacin. i strongly dislike imitrex, sumatriptans etc as they may stop an attack but make the next ones so much worse. my attacks start at 4am and i am falling asleep around 7pm with the help of cannabis/sleeping tablets. thankfully, unlike most of you im still getting around plenty of sleep. of course i am exhausted and completely useless in this state though. i have some connections and may be able to get some MM (or if anyone is in sydney, australia HMU). the only now medicated relief i get is sitting in a super hot bath with a wet cold towel thats been in the fridge wrapped around my head/neck. questions: 1. has anyone tried indometacin and found relief? 2. in regards to oxygen therapy do people here use the CPAP machines or a the emergency 100% canisters? 3. my following medications (which i basically take the max of each day) are: ibproufen, paracetmol, indometacin, panadeine forte (codeine), aspirin, b12 and magnesium vitamins. i also use oils and tiger balms. would any of these interact with MM dosing? 4. does anyone ins SYDNEY AUSTRALIA recommend a neurologist? preferably closer to the northern beaches/cbd?

I’ve had cluster headaches for over 30 years. I finally greatly reduced my headaches by going to a chiropractor to move a disc back into place that subluxates at C1/C2, which was great since I only had attacks a few times a month instead of 2-3 per day. Now, I’m suddenly getting more attacks. I’m off Sumatriptan cause it doesn’t work now, I’m using Rizatriptan but am not finding it effective and fear that I’m bringing on more headaches. I’m on Verapamil daily but it’s not working. No, oxygen doesn’t work for me. I’d be grateful for any other suggestions, this is getting rough.

After 6 months of suffering from CH once, maybe twice every 2 weeks I was diagnosed with Cluster Headaches. The pain was so severe it was like nothing I had ever experienced before. I was to and from the doctors so many times and left with strange suggestions as to what it could be. After one night when I had 9 attacks on the bounce I went to visit the doctor again, it was then he advised it was CH and I was prescribed 25mg of Topiramate on the proviso that it would help improve the severity and frequency of the attacks (this was about 6 weeks ago). I had an MRI scan and I am awaiting results. My headaches have become more frequent now - I get at least one every day. I am waiting to see a Neurologist next month who will decide upon the best course of action (medication wise as I’ve heard mixed things about Topiramate or Topamax). There seems to be no trigger other than as soon as I get home from work?! I have noticed a change this week in that I have been getting attacks when in meetings or simply sitting on my sofa at home doing nothing! I am hoping some of you can share your experiences with me - have you seen a change in your attacks since being put on meds? Does anyone have triggers? Thank you in advance!

Hi All Is anyone (UK) suffering unnecessarily due to difficulties with speed of service. Last cycle was April time. Usual Verapamil treatment failed to work so I survived on Sumitriptan. Managed to get phone appointment with doctor and eventually face to face appointment once additional doses of Verapamil failed to improve headaches. Doctor booked a Neuro appointment but cycle finished before this appointment (August) Saw neuro in August who sorted new treatment plan including oxygen - but couldn’t do anything about it until next cycle began. Shadows started yesterday so I was straight on it. Called doctors at 9 but earliest appointment I could get out of work hours was in 3 and a half weeks. (My cycle will be in full swing by then) Telephone appointment in 2 weeks but can’t answer the phone at work due to my job. (They can’t give a specific time) Was told I couldn’t get Neuro recommended prescription until I’d consulted with doctor. Took day off today to call the appointment line at 8:30 to try to get an appointment for today over the phone. Had to call 101 times from dead on 8:30 before being connected. Had to pester for a telephone appointment today because apparently an ongoing issue doesn’t count as an emergency (even though I was told yesterday I could phone and get an appointment the same day) had to argue my case for a phone call because I said I’d been seen by the Neuro and was asked why I didn’t get what I needed in August and had to explain the cycles and the fact that it took 4 months to get a Neuro appointment by which time I was out of cycle. Then had to explain what life would be like every day that I don’t have that medication. Shes going to pass the info to the doctor so fingers crossed I get a call today. Has anyone had the same experience of never being able to get to the bottom of anything before the cycle is finished if it’s own accord and then feeling like you’re starting again from scratch each time the cycle starts again. It’s a race against time! I’ve got 2 Sumitriptan injections left from last time so if the headaches kick in fully before I can get the medication I need I’m in for a terrible ride. (Once you put prescription in it usually takes 3 working days for Sumitriptan at least as they have to order it-that will take me to Monday even if I’m sorted today) On another note, I tried to bust yesterday (has worked before) but dried mushrooms I had stocked up since May didn’t work-not sure if I under dosed or if they lost potency due to storage. Didn’t get any effect at all (usually have some mild side effects) I could try again at the weekend and increase the dose (to avoid shutting the door) I don’t have any meds’ in my system -I issued coffee successfully for shadows. Just depends if the real Clusters kick in before the weekend ☹️ Many advise, guidance or sympathy appreciated!

I'm pretty new to this migraine business, but since they started they're pretty frequent. Pain killers work, but they're short lived and do nothing to prevent the attack. Besides, i'm worried about what these medications do to my liver. I want to try and unconventional approach. I talked to some redditors and found out about this place. Someone mentioned microdosing shrooms would work. My biggest problem with my migraines is nausea. I can stand the pain, but nausea cripples me. I'm willing to try anything that works. So does anyone have experience/suggestions in what to give a try? Plus a guide on dosage for microdosing, if you know anything about it.

Has the CH community ever thought about a pre-planned legal fight to defend someone that had been charged with possession of any of these MEDICATIONS ?? I was just wondering if the CH community and/or organizations have ever stepped in to help someone that took or had in their possession MM (Or another alternative med)? I read in a thread somewhere that a man was arrested, charged, and eventually plead guilty to a lesser felony charge which left him on probation for years and ended up costing him alot of money. He posted that he wished he would've fought it against it tooth and nail because it was a MEDICATION that helps him. I personally know of some doctors, neurologist, and other 'headache specialist' that 'Unofficially' support the use of these MEDICATIONS for the treatment of cluster headaches. Some of these doctors are very well known and highly respected individuals. Are there any lawyers that believe in this and would be willing to step in to help that person PROVE that they had this for MEDICAL PURPOSES ?? I think a legal fight WITH THE HELP AND SUPPORT of fellow clusterheads, lawyers, and doctors might be a way to gain big time attention and awareness to cluster headaches and the treatment, or lack there of. It may even open the door for further studies into this as a real and LEGAL way to treat clusterheads. Opinions ?? And BTW, NO, I'm NOT in any legal troubles nor do I intend to be to unless I a had a bandwagon of support up front. If I had that kind of support, I'd risk it to raise awareness, to possibly help others, and to possibly change the law about using this as a MEDICATION.